The evolving physician role in end of life decision making

I was taught in medical school (some 50 years ago) that doctors had a special duty to protect the patient. That seemed self evident and logical. “Do no harm” was a first principle dating back to Hippocrates. However the teaching I received extended the concept to also protect the patient from bad news, and to make “the right” decision for them — not necessarily including them in the conversation or decision making because “it would be too hard on them.”

“Students, you should never tell a patient of the diagnosis of cancer,” pontificated our chief of surgery. “You should protect them and not give them a fatal diagnosis. Do not tell them that the cancer has progressed, but do let a trusted family member know.”

Well, the paternalistic era of “doctor knows best,” the ethical principle of beneficence, has been largely supplanted by the ethical principle of autonomy in the USA. The modern era of full disclosure, informed consent, and shared decision making has become commonplace and accepted. The idea that we decide and make choices for ourselves jibes well with the cultural norms about “self” in modern American society.

But some other countries have maintained a special role for the doctor, a much more paternalistic one. Perhaps this has evolved from the central authority of the king with divine powers and the royal healing touch. This may have led some countries to pass laws to give a doctor special life and death decision making. He/she is allowed to remove life support or end a life without consent of the family.

There are current legal end of life cases in France where a doctor’s role is being questioned: “For many French, it is precisely because doctors are professionals, bound by medical and legal principles — not, in theory, by emotion or subjective experience — that they should be charged with making end-of-life decisions.”

But does this mean the administration of lethal drugs and intentionally stopping the heart is acceptable when doctors deem it’s in the best interest of the patient? Should the doctor have these powers? Some doctors in France would say “yes” feeling that by taking on this difficult decision that they are relieving the family of the burden of guilt and emotional distress.

My own approach and one now commonly used in the USA is shared decision making which allows for full disclosure and, as best as possible, tries to ascertain and carry out the wishes of the patient. After all, it’s the patient’s life and should be the patient’s choice. I found that the family could be comfortable with an end of life decision if they felt it would be their loved one’s wish. They would be honoring a choice, not making it.

My understanding is that France is still behind the curve in end of life care, but beginning to change. About 57% of deaths there occur in a hospital whereas the in-hospital deaths average less than 28% in the USA. The use of coordinated care with hospice and home health care is now allowing most patients to die where they wish — in their home or at least in a home-like environment. Consultation with palliative care and the involvement of primary care to coordinate the overall care can help remove the unnecessary high tech interventions and help the family and patient focus on the final things important to them.

I suspect that France’s views will evolve. Medical decision making rights are very special — and are a human right which we need to protect for all of us.